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Going Overboard With Palliative Care
There is a significant lack of consumer knowledge and communication about palliative and hospice care. After all, what doctor wants to tell a patient they are dying? This conversation can be viewed as an admission of failure rather than an act of kindness telling someone it is okay to stop all the exhausting, sickening and painful treatments in favor of being more comfortable and relatively pain free. No one wanted to tell my father-in-law he was dying after long months of chemotherapy and radiation. In fact no one would admit to reality until I forced my mother-in-law to ask for a prognosis given only five days before he died. I had been questioning palliative care for months; no one wanted to discuss it. In my opinion months wasted in pain could have been months relatively pain free with better quality of life.
According to research, although Americans are living longer, they are also taking longer to die. Moreover, 3 out of 4 Americans do not fear death as much as they fear being in pain at the time of death. Yet many Americans do not experience a good death and few die at home. (1) A report by the Medicare Payment Advisory Commission (2006) documented that fewer than 30% of all Medicare decedents, regardless of where they died, received an adequate amount of pain management. Similarly, less than 20% of people between the ages of 65 and 74 who died in hospitals received palliative care consultation and pain management.(2)
Reading this, one would be led to believe that the health care community is doing nothing when in reality; some communities are going overboard to compensate. Let us take a look at another example. The mother of a client was admitted to a local hospital to treat pneumonia. Before her personal cardiologist and pulmonologist could consult, the hospital palliative care team rushed in to speak to the family. They recommended taking mom off oxygen, antibiotics and nutrition and only performing comfort measures which would certainly result in death.
When the cardiologist and pulmonologist arrived on the scene several hours later the fireworks began. Mom's physicians chastised the palliative care team for prematurely putting a woman in her grave long before her time and for unnecessarily frightening the family. The palliative care team used the defense that there was a notation in the woman's living will that she did not want to live unless she could regain 75% function. While there is no way to predict a regain of function, in this case family members knowing their mother to be a fighter and in perfect physical health prior to the pneumonia were ignored by the palliative care team.
Believe it or not, both cases are similar. Similar in the fact that family members lacking knowledge and leaving decisions up to physicians they viewed as knowing, resulted in heartbreaking and near tragic outcomes. I wish these examples were limited only to palliative and hospice care. The fact is that distressing situations such as these are prevalent in health care.
My advice to families is to listen to physicians but also to speak up about individual preferences and abilities of the person under consideration; more importantly to question recommendations and look for self interest by those making recommendations. A family member with leukemia continued for months in an experimental treatment program promoted by her physician when she could have had a different experience during the last months of her life. Everyone in the family assumed this individual wanted to continue in the program so that she could make a difference in future lives; however no one really asked.
(1) Singer, P.A. et al. (1999) Quality End of Life Care: Patients' Perspectives. JAMA, 281, 163-168.
(2) Smits, H.L. et al. (2002) Palliative care: An Opportunity for Medicare. New York: Mount Sinai School of Medicine, Institute for Medicare Practice.
About the Author Pamela D.Wilson, The Care Navigator, specializes in consulting, planning and education for families and individuals experiencing transitions in health care. Contact her at The Care Navigator or visit The Care Navigator Blog for free information
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